236

Seminars in Oncology Nursing, Vol 28, No 4 (November), 2012: pp 236-245

THE IMPACT OF CAREGIVING ON

THE PSYCHOLOGICAL
WELL-BEING OF FAMILY
CAREGIVERS AND
CANCER PATIENTS
LAUREL L. NORTHOUSE, MARIA C. KATAPODI, ANN M. SCHAFENACKER,
AND DENISE WEISS
OBJECTIVES: To provide an overview of patient and caregiver emotional
distress; examine the sources of their distress, review evidence-based
interventions that can reduce distress, and provide guidelines for assessment
and intervention.
DATA SOURCES: Peer-reviewed publications.
CONCLUSION: There is a significant, reciprocal relationship between patient
and caregiver emotional distress. Sources of distress vary by phase of illness.
Evidence-based interventions can reduce distress and anxiety, but often are
not implemented in practice.

IMPLICATIONS

FOR NURSING PRACTICE: Nurses need to assess patients and

family caregivers for distress and intervene to reduce distress by fostering
patient-caregiver teamwork, communication, and self-care; providing
information; and referring to resources as needed.

KEY WORDS: Emotional distress, anxiety, family caregivers, assessment,

intervention
Laurel L. Northouse, PhD, RN, FAAN: Mary Lou Willard French Professor of Nursing, University of Michigan School of Nursing, Ann Arbor, MI. Maria C.
Katapodi, PhD, RN: Assistant Professor, Robert Wood
Johnson Foundation Nurse Faculty Scholar, University of Michigan School of Nursing, Ann Arbor, MI.
Ann M. Schafenacker, RN, MSN: Research Project
Manager, FOCUS Program, University of Michigan
School of Nursing, Ann Arbor, MI. Denise Weiss, FNP,

BC: Family Nurse Practitioner, Phase I Clinical Trials,

Karmanos Cancer Institute, Detroit, MI.
Address correspondence to Laurel L. Northouse,
PhD, RN, FAAN, School of Nursing, University of Michigan, 400 N. Ingalls, Ann Arbor, MI, 48109. e-mail:
lnortho@umich.edu
2012 Elsevier Inc.Open access under CC BY-NC-ND license.
0749-2081/2804
http://dx.doi.org/10.1016/j.soncn.2012.09.006

IMPACT OF CAREGIVING ON PSYCHOLOGICAL WELL-BEING

ANCER affects the quality of life of

family caregivers in many ways, but
takes its greatest toll on their psychological well-being. Family caregivers
are expected to provide complex care in the
home with little preparation or support.1 When
the demands placed on caregivers exceed their
resources, caregivers feel overwhelmed and report
high stress. The stress has a negative effect
initially on the caregivers psychological wellbeing, but as the stress continues it can negatively
affect their physical well-being as well. The effects
of stress on the psychological domain of quality
of life appear as increased emotional distress,
anxiety, and/or depression; feelings of helplessness
and loss of control; and difficulty in coping with
caregiving roles.2
High emotional distress reported by family caregivers is a significant problem that needs to be
addressed for a number of reasons. First, longitudinal studies indicate that when family caregivers
are highly distressed, it has a negative effect on
the patients long-term adjustment.3 Over time,
a highly anxious partner can increase the anxiety
experienced by the patient.4 Second, distressed
caregivers have more difficulty providing optimal
patient care1 and administering medications to
patients.5 Third, caregivers who have high distress
also have changes in their immune system that
can lead to flare-ups in auto-immune diseases,
worsened glucose control in the body, and increased vulnerability to cardiovascular diseases.6
These changes increase the likelihood that the caregivers own health will suffer and, subsequently,
hinder their capacity to provide care.
To gain a broader understanding of the effects of
cancer on caregivers psychological well-being,
this review addresses the following: 1) provides
an overview of patient and caregiver emotional
distress, 2) examines the sources of their distress
by phase of illness, 3) reviews evidence-based
interventions that can reduce patient and caregiver distress, and 4) provides guidelines for assessing and intervening with patients and
caregivers in practice settings.

237

with cancer. However, as studies examined the

impact of cancer on the family over time, health
professionals and others became more aware of
the emotional distress experienced by family
members as well as patients.
Two meta-analyses examined the emotional
distress reported by cancer patients and their family
members.7,8 Hodges et al8 conducted a metaanalysis of 21 studies, with a combined sample of
1,098 patient-caregiver dyads, to determine if there
was a relationship between the distress reported by
cancer patients and their family caregivers. They
found a moderate, significant relationship between
their distress scores (r 0.35, P < .0001), indicating that their emotional responses to the illness
were interrelated. When patients were distressed,
it was likely that their caregivers were distressed,
and vice versa. Hagedoorn et al7 conducted
a meta-analysis of 46 studies that examined distress
in couples coping with cancer (N 2,468 dyads).
They found a significant correlation between
patients and their spouse caregivers level of
distress (r 0.29, P < .001), even after controlling
for illness-related factors such as the patients stage
of disease. Their findings suggest that couples react
to cancer as an emotional system, and that the
patient-caregiver dyad must be viewed as the unit
of care (see Fig. 1).
Even though patient and caregiver distress is
related, some investigators have questioned,
Who has more emotional distressthe patient
or the caregiver? When this question was examined in two meta-analyses, investigators found
no significant difference in the amount of distress

OVERVIEW OF PATIENT AND CAREGIVER

EMOTIONAL DISTRESS
For many years, it was assumed that cancer had
little effect on the well-being of family caregivers
because caregivers were not the ones diagnosed

FIGURE 1. Reciprocal relationship between patient and

caregiver emotional distress. Each partner affects the other
throughout all phases of illness.

238

L.L. NORTHOUSE ET AL

reported by patients and their caregivers.7,8 They

also found no significant differences in their
emotional distress by phase of illness. One metaanalysis found a tendency for caregivers to report
more distress during the treatment phase (P <
.08) when physical and emotional caregiving
demands were high, and a tendency for patients
to report more distress 1 and 2 months following
diagnosis (P < .08) as they continued to struggle
with the new diagnosis.8
The distress reported by couples facing cancer
was compared with couples who were not facing
cancer. Investigators found that cancer patients
and their spouse/partners had significantly higher
distress than the comparison group.7,9 Couples
facing cancer had modestly elevated levels of
distress that, on average, was below cut-off points
indicating high distress or clinical depression
on established instruments.7 However, there is
a subgroup of patients and caregivers who do report
higher distress or more depression than others. Zabora et al10 examined the distress levels of a large
sample of cancer patients (N 4,496) and found
the rate for high distress in the sample was 35.1%.
While the rate of distress ranged from a low of
29.6% (gynecological cancer patients) to a high of
43.4% (lung cancer patients), these levels of distress
are very significant. The incidence of high distress
or depression in caregivers has been estimated at
approximately 20%.11-13 However, the incidence is
higher when patients have high symptom distress,
poor physical functioning, and advanced disease,14
and also when caregivers report high caregiver
burden and little support from others.14
Gender is a key factor associated with distress in
patients and caregivers. Female patients and
female caregivers report more distress than their
male counterparts.15 Female caregivers, however,
have the highest distress of all.16 In contrast to
male caregivers, female caregivers spend more
time providing care,17 provide more complex
care,17 perceive less support from others,16 and
have more noncancer-related stress, in addition
to the stress of cancer.16

SOURCES OF DISTRESS BY PHASE OF ILLNESS

There are many sources of emotional distress and
they can vary according to the phase of illness. The
sources of distress for patients and caregivers are
briefly described for the following six phases during
the cancer trajectory: 1) prediagnosis, 2) diagnosis,

3) treatment, 4) survivorship, 5) recurrent, and 6)

advanced and end of life. Table 1 highlights the
major sources of emotional distress by phase.
Prediagnosis Phase
With advances in genetic testing, more people
are learning about the possibility of hereditary
cancer in their own families. Genetic testing identifies at-risk individuals and provides them with
information about strategies they can use to lower
their risk of developing cancer, such as riskreducing surgery and intensive surveillance. A
recent study found that mutation carriers did
not differ significantly from non-carriers in
psychological distress at the time of test results
and at short-term follow-up. However, both groups
showed an increase in anxiety and depression
from 1 to 3 years after test disclosure.18
There are many sources of distress for families
with hereditary cancer, such as learning about
the risk of hereditary cancer in the family,
deciding whether or not to seek genetic testing,
determining whether or not to disclose test results
to family members, and deciding how to manage
this risk if they test positive.19 Even relatives
who test negative for a deleterious mutation identified in their family, experience guilt about
communicating their results to untested siblings,
who may still face a 50% chance of harboring the
same mutation.20
Partners also experience distress when their
loved ones are at greater risk for rare hereditary
cancer syndromes.21 Approximately one in three
partners (28%) had clinically relevant levels of
distress, which correlated significantly with the
distress reported by the person at risk of rare
hereditary cancer. Partners with higher distress
were generally younger than other partners and
lacked adequate social support. Enhancing family
support and family communication about cancer
risk and ways to manage it are important areas
for intervention.22
Diagnosis Phase
Many studies have documented the emotional
distress reported by cancer patients and their
family caregivers following the diagnosis of cancer.
Findings indicate that both patients and caregivers
report shock and anxiety at the time of diagnosis.
Kim et al23 assessed the needs of three cohorts of
caregivers who were 2 months, 2 years, and 5 years
following diagnosis. Caregivers of newly diagnosed
patients (ie, 2-month cohort) had more unmet

High symptom distress in

patient
Difficult family relationships
Feelings of abandonment
Competing outside
demands (work)
Lack of financial and
community support
Poor self-care (exercise,
diet, substance misuse)
Increased uncertainty and
hopelessness
Period of emotional turmoil
and increase in perceived
threat
Higher symptom distress
and more role limitations
for patient
Fewer sources of support
Fear of recurrence
Multiple family stressors on
top of history of cancer
Inability to find some benefit
or meaning in the illness
Worry about effectiveness
of treatment
Difficulties managing side
effects of treatment
Lack of preparation for
providing complex care
Juggling multiple demands
without help from others
Social isolation
Awareness of hereditary
cancer in family
Involvement in decisions
about genetic testing
Difficulties with family
communication regarding
cancer risk
Worry about offspring
and dealing with issues
of guilt

Unmet needs:
psychosocial, medical,
financial and
informational
Uncertainty about how to
address patients
emotional concerns
Feelings of being
overwhelmed and
powerless
Multiple role demands of
household, work,
providing care

Survivorship
Treatment
Diagnosis
Pre-diagnosis

TABLE 1.

Sources of Caregiver Distress Through the Phases of Illness

Recurrence

Advanced/End of Life

IMPACT OF CAREGIVING ON PSYCHOLOGICAL WELL-BEING

239

psychosocial, medical, financial, and informational

needs than caregivers in the other two cohorts.
Younger caregivers reported substantially more
unmet needs in all domains than older caregivers.
A major concern for caregivers during this phase
is helping patients deal with emotional distress
associated with their new diagnosis of cancer. Partners of breast cancer patients reported that at the
same time their lives were shattered by the cancer
diagnosis, they did not know what to do to support
their distressed wives and had to guess.24 Spouses
often kept their worries to themselves because
they did not want to add to their wives burden.
Caregivers convey that helping patients to cope
with emotional distress (eg, anger, anxiety,
depression, fear, and resentment) is one of their
highest unmet needs following diagnosis.23 Caregivers reported less confidence helping patients
with their emotional needs, than with their physical needs.1 Partners often want to do the right
thing but are unsure what that is. Others,
including health professionals, may erroneously
assume that family caregivers who have a close
relationship with the patient will automatically
know what to do or say. However, as research indicates, family caregivers often feel unprepared
to deal with the array of intense emotions
surrounding the diagnosis. Helping patients and
caregivers to manage acute distress is a critical
need during this phase of illness.
Treatment Phase
Just after diagnosis, patients and caregivers are
confronted with new and unfamiliar treatments
for the cancer. Sources of distress during this
time are related to their worry about the patients
ability to tolerate the treatment, if the treatment
will be effective, and if side effects and symptoms
associated with the treatment will be manageable.
During this phase, caregivers are more involved in
providing physical care and managing treatmentrelated symptoms. In a study where caregivers
were responsible for monitoring changes in the
patients condition and providing care, half of the
caregivers reported that they did not get the
training they needed to provide high quality
care.1 One fourth of the caregivers were concerned that their care was less than optimal.
It is not surprising that during the treatment
phase caregivers often report greater caregiver
burden and strain than they do in some of the
other phases of illness. The majority of caregivers
(67%) in a large study reported that they were the

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L.L. NORTHOUSE ET AL

sole providers of care and received no informal

help from others.1 Caregivers who reported
a greater impact of caregiving on their day-today schedules and social functioning, and who
felt abandoned by others, experienced more
emotional distress.14 These caregivers are likely
to benefit from more information and support
from health professionals.
Survivorship Phase
The survivorship phase is characterized as the
time when the cancer is in remission or when
the patient is considered cured. The quality of
life of cancer survivors and their caregivers was
comparable to the normal population in two
studies of couples who were approximately 2
years25 or 4 years post-diagnosis.26 Survivors and
their family caregivers had normal levels of
distress25 and depression rates that were consistent with community samples.26 Approximately
70% of the survivors and caregivers were able to
identify some positive aspect associated with their
cancer experience (eg, realizing how precious life
is, appreciating relationships).26
A number of factors are related to a higher quality
of life in survivors and their family caregivers during
this phase. Mellon and Northouse27 assessed the
quality of life of survivors and their family caregivers. Survivors, randomly selected from a national
cancer registry, were disease-free and approximately 3 years following diagnosis. Higher quality
of life of the family overall (combined patientfamily member scores) was associated with higher
family hardiness, more social support, greater
ability to find meaning in illness, and with the
survivor being employed at the time of the interview. Lower quality of life was associated with
more concurrent stress in the family, somatic
concerns in survivors, and higher fear of cancer
recurrence in survivors and family members.27
A universal concern during survivorship is the
fear that the cancer will recur. Family caregivers
often report more fear of recurrence than survivors,28 possibly because they interact less with
health professionals than patients, and have fewer
opportunities to obtain information that could
lessen their fears. There is a fairly strong correlation between the levels of fear of recurrence reported by survivors and their family caregivers,
suggesting that they mutually influence one
anothers fear.28 Helping survivors and caregivers
to manage fear of recurrence is an important
area for intervention during this phase.

Recurrent Phase
When the cancer returns, it is a devastating time
for patients and their family caregivers. Recurrence shatters their hope that the cancer was
cured, and it often requires patients to receive
treatment againwhich in many cases is palliative rather than curative. Studies that compared
the quality of life of patients with recurrent versus
newly diagnosed cancer report that recurrent
cancer patients have significantly lower quality
of life, more pain, more role limitations, higher
symptom distress, and a more negative appraisal
of the illness.29 Their family caregivers report
more uncertainty, hopelessness, and adjustment
problems,30 and a lower mental quality of life.29
Although recurrence can be a devastating blow,
Andersen et al31 assessed women with recurrent
breast cancer from diagnosis through 8 years
follow-up, and found that they were very resilient.
According to the investigators, these women were
knowledgeable about cancer from their initial
diagnosis, were familiar with the medical system,
and had established relationships with their
oncology staff, all of which may have lessened
their anxiety and stress at the time of recurrence.
Of the women who had a recurrence (13.5%), their
level of cancer-specific stress was equivalent to the
level of distress at the time they were initially diagnosed. Although survivors with recurrent disease
in this study were resilient, more information is
needed about the resilience of family caregivers
who were not assessed in this study. In other
studies, family caregivers during the recurrent
phase report higher uncertainty and fewer sources
of support than survivors.29
It is important to note that the recurrent phase of
cancer can lead to very different outcomes in
patients and their families over time. Some survivors experience long disease-free remissions, while
others face a steady progression of their cancer, in
spite of having undergone multiple unsuccessful
treatments. These two scenarios can have very
different effects on the quality of life and distress
levels of cancer patients and their family caregivers
during recurrence, and they will require different
interventions from health professionals.
Advanced and End-of-Life Phase
Advanced cancer is often characterized by high
symptom distress in patients and high caregiver
burden in their family members. Some patients
are informed that they have advanced cancer at
the time of their diagnosis, but for many patients

IMPACT OF CAREGIVING ON PSYCHOLOGICAL WELL-BEING

the cancer progresses to an advanced phase over

time. Researchers in one study found that caregivers of patients with a short time interval
between diagnosis and death experienced more
symptoms of depression.32
As the end of life approaches, caregivers in some
studies reported depressive symptoms that
equaled or exceeded thresholds for clinical
depression.32 Sources of caregiver depression are
related to more negative family relationships,33
including a sense of abandonment,32 more outside
demands related to their employment, and more
symptom distress in patients.32,34 In one study,
the majority of caregivers (71%) needed substantial help with managing the patients symptoms,
and this need remained unmet for 43% of the caregivers through the end of the patients life.34 Caregivers who had substantial unmet needs related to
symptom management, and difficulty obtaining
financial and community support, were more
likely to report that the patient received lower
quality of care at the end of life than caregivers
who had fewer unmet needs.34
As the patient nears the end of life, another
concern is that the caregivers health may
decrease as they engage in fewer healthy lifestyle
behaviors. In a study of caregivers of patients
who had mostly advanced ovarian cancer, 42% reported a decrease in physical activity, 35% gained
weight, and 12% reported an increase in alcohol
intake.11 Caregivers who reported more distress
and more caregiving demands had more negative
changes in their health behaviors. Although this
is an area for primary prevention, few interventions have been designed to help caregivers of seriously ill patients to maintain their own health.
Effective interpersonal relationships among
family members, between patients and caregivers,
and with health professionals are especially
important as patients near the end of life and caregiver burden increases. In families that are more
cohesive and have less conflict, caregivers report
less caregiver burden, in part because they are
likely to get more help from other family
members.33 In couples with better marital relationships, caregivers have less depression and
less difficulty providing care.35 In addition, when
caregivers have better interpersonal relationships
with health professionals, caregivers report better
health and feel less abandoned.33 Although maintaining family relationships is important, very
few interventions try to strengthen these relationships as a key component of end-of-life care.

241

EVIDENCE-BASED INTERVENTIONS TO REDUCE

EMOTIONAL DISTRESS IN PATIENTS AND FAMILY
CAREGIVERS: META-ANALYSIS FINDINGS
There is evidence that interventions can reduce
emotional distress in patients and their caregivers.
One meta-analysis examined the outcomes of 29
randomized clinical trials that delivered psychosocial interventions to cancer patients and their
family caregivers, or to caregivers alone.36 The
investigators pooled the data from these 29 studies
and then analyzed it to determine if the interventions had any effects on several different caregiver
outcomes. Findings from the meta-analysis indicated that the interventions had a number of
positive outcomes for caregivers. They reduced
caregivers burden, increased caregivers knowledge and perceived benefits of caregiving,
enhanced caregivers coping resources and selfefficacy, and improved many aspects of the caregivers quality of life.
The interventions reported in the 29 studies
were examined for content, dose, and delivery
format. The types of interventions were classified
into three groups: 1) psycho-educational (57.1%);
2) skills training (25.7%); or 3) therapeutic counseling (17.1%). The dose of the interventions
ranged from two to 16 sessions, with the average
number being 6.7 sessions. In regard to delivery
format, two thirds were delivered jointly to
patients and their caregivers and one third to caregivers only. Most interventions were offered in
a face-to-face format (68.6%), some were delivered
by phone (20%), and only a few in a group format
(11.3%). Two studies used a combination of faceto-face and phone interventions. No studies used
Web-based interventions.36
Of the 29 studies included in this meta-analysis,
16 examined the caregivers emotional distress or
anxiety. Findings indicated that the interventions
significantly reduced the caregivers emotional
distress and anxiety. Although the size of the
intervention effect was small to medium (range,
.16 to .29), the interventions had a clinically
significant effect.36
The meta-analysis also examined the effects of
the interventions on the caregivers depression in
16 studies. Overall, findings from the metaanalysis indicated no significant reduction in caregiver depression.36 However, this finding must be
viewed with caution because in some studies caregivers had little depression at the start of the study,

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L.L. NORTHOUSE ET AL

and in other studies, caregivers who were more

depressed dropped out of the study. Similarly, in
a separate meta-analysis that examined the effect
of interventions on depression in cancer patients,
there was also no significant reduction in patient
depression.37 Findings from these meta-analyses
suggest that it may be more difficult to reduce
depression than to reduce emotional distress and
anxiety, but this needs further research.

GUIDELINES FOR ASSESSING AND INTERVENING

WITH CAREGIVERS AND PATIENTS IN CLINICAL
PRACTICE
Although a number of research-tested interventions have reduced emotional distress and anxiety
in caregivers of cancer patients, few of these
evidence-based interventions have been implemented in practice settings because of a number
of challenges. Many of the effective intervention
programs were conducted as part of randomized
clinical trials that often consisted of six or more
face-to-face intervention sessions, which are difficult to implement in busy practice settings.
Furthermore, oncology nurses and others face
time constraints in practice settings. Out of necessity, nurses often spend time completing physical
assessments and treatments, leaving little if any
time to address psychosocial concerns. There is
a need for more efficient ways to assess the
psychosocial concerns of family caregivers in
practice settings and to make better use of interventions and referrals.
Assessment
It is important to assess the caregivers concerns
on a regular basis. Such an assessment could use
a series of clinician-designed questions as illustrated in Table 2, or more formal assessment
instruments such as the Distress Thermometer.38

We developed four questions to assess caregiver

distress (see Table 2) that could be built into
a patient assessment or that could be used separately to assess caregiver emotional distress. The
questions center on whether caregivers: 1) have
the tools to provide optimal care; 2) are able to
juggle multiple responsibilities; 3) engage in selfcare to maintain their health; and 4) are able to
keep their spirits up as they deal with the stress
associated with caregiving. There are many questions that could be used for a clinician-based
assessment, but these key questions should be
included in any assessment.
There are also established instruments to assess
emotional distress. The Distress Thermometer is
widely used and has been validated to assess
patient distress38 and caregiver distress.39 It has
established cut-off points that indicate when
patients or caregivers have high levels of distress
warranting professional intervention. Bevans and
Sternberg40 identified other formal ways to screen
for distress in practice settings, such as using
anxiety and depression items from PROMIS (the
Patient Reported Outcomes Measurement Information System).41 The advantage of using formal
assessment tools is that they have established reliability and validity and can be compared with
other normative data. Whether to use a formal
instrument or a series of questions will depend
on the clinicians preference and nature of the
practice setting.
Interventions for Caregivers and Patients
The key approach to interventions designed to
decrease emotional distress is to treat the
patient-caregiver dyad as the unit of care. As indicated in this review, there is substantial, welldocumented evidence that both patients and their
family caregivers are affected by the illness, and
each affects the others emotional response to it.
From a dyadic perspective, when caregivers needs

TABLE 2.
T-A-S-K Questions to Assess for Caregiver Distress
Tools?
Able to juggle?
Self-care?
Keeping spirits up?

Do you have what you need (the tools) to provide the best care possible to ____ (cancer patient)?
(eg, knowledge, time, finances, outside support)
Are you able to juggle your caregiving responsibilities with your other day-to-day responsibilities?
Are you taking care of yourself? (eg, taking breaks from caregiving, following healthy lifestyle habits,
keeping own health care appointments)
Are you keeping your spirits up? (eg, assess for sadness or depression)

Caregivers who answer No to any of the above questions may be at risk for caregiver strain and psychological distress.

TABLE 3.
Interventions for Patient-Caregiver Dyads that Help Decrease Caregiver Distress
Intervention

Rationale

Specific Strategies to Offer Dyad or Caregiver

Picture yourselves as a team that is facing cancer together
Look for ways to support and help each other
Be aware of each others strengths and make the most of them
Express appreciation to each other
Share problems and work together to figure out solutions
Respect each other; take each others concerns seriously; value each others opinion even if different
Dont let cancer consume you; focus on what gives your lives meaning and purpose
Recognize when you need outside help

Foster open communication

Increases understanding and

feelings of connectedness
Decreases stress
Improves problem-solving

Talk about how things are going; share your feelings even if its hard at times
Make time to talk; create a quiet setting (turn off phones and TV)
Show you want to listen; keep your body relaxed and make eye contact
Try to understand feelings along with words; ask if youre not sure
Try not to interrupt, argue or criticize
Be patient and kind with each other. Show your affection it costs nothing and means a lot to those
you care about.
Share your fears and worries; it makes them less overwhelming. Then you can deal with them together
with each others support

Encourage
caregiver self-care

Maintains caregivers physical and

emotional ability to provide care

Set aside time to meet your own needs

Schedule breaks away from caregiving demands
Practice healthy lifestyle habits: sleep, physical activity, nutrition
Keep your own health care appointments
Talk to other caregivers; consider joining a support group

Provide information

Decreases stress
Reduces uncertainty
Increases caregiver competence

Refer

Provides additional resources

Enhances caregivers capacity
to continue providing care

Obtain information to increase your knowledge and confidence

Go to patients appointments together and bring a list of your questions
View online caregiver resources. Some reliable websites are:
National Cancer Institute:
http://www.cancer.gov/cancertopics/pdq/supportivecare/caregivers/
Cancer Care (also available by phone: 1-800-813-HOPE [4673])
http://www.cancercare.org/tagged/caregiving
Cancer Support Community
http://www.cancersupportcommunity.org/MainMenu/Family-Friends/Caregiving
Expand your informal support network (family, friends, neighbors)
Identify other people who may be able to help you
Utilize referrals to professional services:
Counseling, therapy
Social work, financial services
Spiritual care
Chore services
Hospice

243

Increases family bonds

Decreases stress
Improves coping

IMPACT OF CAREGIVING ON PSYCHOLOGICAL WELL-BEING

Encourage teamwork
and mutual support

244

L.L. NORTHOUSE ET AL

are not addressed, their mental and physical

health is at risk, which leads to patients not
receiving optimal care from a well-prepared, confident caregiver.36
Table 3 lists a series of interventions that focus
on helping patient-caregiver dyads to decrease
caregiver distress, which is the primary focus of
this article. The areas of intervention are: 1)
encourage teamwork and mutual support; 2)
foster open communication; 3) encourage caregiver self-care; 4) provide information; and 5) refer
as needed to additional resources. Specific strategies to offer the dyad or caregiver in each area are
also listed in Table 3.
Because of scarce health care resources, innovative ways are needed to address caregiver as well as
patient needs. The Internet, smartphones, and
Facebook are all untapped ways of providing information and support. A large survey of caregivers in
the United States indicates that they are particularly interested in using technology to gain information and to improve the quality of patient
care.42 Future research should determine the best
way to use technology, while at the same time

preserving important patient-family-professional

interpersonal relationships that are essential for
managing the stress associated with cancer.

CONCLUSION
This review of research confirms that cancer
can affect the quality of life of family caregivers
in many ways, but particularly in the psychological domain. Patient and caregiver emotional
distress is evident in each phase of illness, but is
greater in some phases (diagnosis) than others
(survivorship). Although there are a number of
research-tested interventions that can reduce
the caregivers emotional distress, a continuing
challenge is finding ways to implement evidencebased interventions in the practice settings. An
important first step is to assess the needs of family
caregivers to assist them in reducing their
emotional distress. The ultimate goal is for caregivers to continue to be effective caregivers
without compromising their own health and
well-being.

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